Wellness Barometer

Today was my fourth round of Folfox (systemic chemotherapy). By the time the treatment was nearing completion, the nausea was coming into effect. This is a new experience with this treatment. And fortunately, the nurses have me trying a new combination of anti-nausea medications, with the intention to reach 99% effectiveness. I look forward to that possibility. Oddly, at the moment, writing this post seems to be distracting me from the nausea.

What I've noticed with the last three systemic treatments is how the level of hopefulness, or more specifically the hopelessness I feel about my overall future and chances of long-term survival, are directly related to the side-effects I experience from the treatment. And at the moment, another side-effect I'm experiencing is my ability to think clearly. It took me three or four minutes to figure out how to write the first sentence of this paragraph. "Chemo-brain" is often the term used by my peers for the lack of clarity or forgetfulness which often results from systemic chemotherapy. When I feel my worst, usually Friday and Saturday, my thinking tends to go unchecked, or shall I say, less frequently checked by me the observer of my own thoughts. And when I do notice my thinking, I find it to be very negative and hopeless. It's only after the weekend, that I begin to return to feeling hopeful.

One of things I've been meditating on is going beyond acceptance of my "humanity" (those parts of my personality I would prefer to do without), and taking on the possibility of gratitude for it. I have very little experience with actually experiencing this way of being, perhaps only a few moments in my entire life, but I can see the light at the end of tunnel. I know it's available to me. And having to manage such intense hopelessness while I experience these side-effects, inspires me to let go of the need to constantly judge myself. Now more than ever.

So, I have begun looking at what structures I can put in place to proactively manage the sense of hopelessness that currently accompanies the side-effects of these systemic treatments. One that I have come up with so far is the incorporation of hypnotherapy and I've scheduled a session for this Friday with a practitioner I have already had two absolutely extraordinary sessions with. Our intention is to do the session while I'm in the midst of this mindset, a place where emotionally, "my edges" are sharpest; when patience is lacking and ultimately I am not present to gratitude. The session will be recorded, so I can listen to it when the side-effects are at their worst and impacting my attitude and beliefs.

Gratitude has become my mental/emotional/spiritual wellness barometer. When I am present to gratitude, I have the experience that "all is well" - all I wish for and all I don't. I experience love. When I am not present to gratitude, I am clear there is something for me to distinguish, perhaps let go of. I have so much to be grateful for. I love my life, just not some of current circumstances. I'm not thrilled with the cards I've been dealt, but I have the opportunity to play the hand, and that is a privilege. Much of my life brings me great joy. My family, my son & step-son, my friends & community, the capacity to coach, and my music & all who share it with me. I'm committed to putting into place whatever tools necessary to represence myself to that which matters to me most.


And at the moment, the health report is slight nausea, fatigue, feel spacey & unclear. Also, my right hand is cramping, causing my fingers to lock in place for a matter of seconds or slowly tighten and curl inward. I just got off the phone with Dr. Garbo's on-call staff and was informed this is often a result of the rate at which the Oxaliplatin (chemo) is being administered and can also show up as leg cramping which sometimes makes it difficult for individual to walk. I was also told that it may get worse before it gets better. My legs cramped up a little this evening, but nothing serious.

Time to call my friend who goes in for surgery tomorrow. She's having a malignant tumor removed. Then I will lay down and get some rest

Lucky

I saw this sign posted over a bar the other day. It made me think of...of me! I just may have found my new nickname.

Haha I love it!!!

The Show is On

So I talked to the fellas and everybody's in. We are going to perform this Friday January 20th from 7-10 PM at Costello's in Auburn.

I am SO excited. And Taylor, Theresa & Joe are an absolute joy to make music with. Plus Patty who owns the place makes us feel as at home as any bar owner can. So if you're free on Friday evening, come on down to Costello's on Aurelius Avenue in the Prison City and let us play a few tunes for you.

Alkaline Phosphatase

 I took a look at this page and realized it's been quite some time since I last posted anything. And I know that often leads to questions about my well-being. So, overall I am well. And the last couple of weeks have been quite hectic.

On Wednesday January 4th, I went to Sloan Kettering for a liver-pump chemo infusion. After my blood work was complete, Dr. Kemeny informed that me the count of a particular liver enzyme, Alkaline Phosphatase, was too high so I would not be receiving the treatment and instead I would receive the traditional systemic treatment in Ithaca on Wednesday January 11th. Before I even thought about how my friend and I just drove all the way to NY only to be told it wasn't necessary, my mind was locked on how I was going to have to call Jack and cancel the gig we had scheduled at O'Toole's for Friday January 13th.

Thus far, the Fridays following my systemic chemotherapy treatment have been very difficult. The side-effects have been nausea; feeling heavily poisoned (the closest thing I can relate it to is a bad whiskey hangover); bone pain in my face, back, hips, thighs and shoulders (very much like sever flu symptoms) as a result of the Neulasta shot; and extreme fatigue. Clearly not something to manage while performing.

And I was so looking forward to doing one of the things I love most. It was only in the car on the way back from NY that I started to think about how much driving we had done, all for naught. And there wasn't anything for me to be upset about. Dr. Kemeny made it clear to me from the beginning that she only wanted her staff to do the blood work that would determine whether I receive my pump chemo treatment. However, upon delivering this news to me, she suggested that from this point forward, I have the blood work done two days prior, by Dr. Garbo's staff in Ithaca, to avoid another unnecessary trip, which I very much appreciated.

In the meantime, I had been preparing for the boy and I to move-in temporarily with a different friend, while I continue to search for an apartment in Ithaca. The place we had been since May was great. And, this is a time I need to selfishly take care or myself, i.e., peace & quiet. Living in a household with one adult and three children, plus my own child, is hardly peaceful and quiet. And there's no reason it should be. Kids deserve to be excited passion-filed little beings, which is not conducive for a person on a seven-month chemotherapy regimen seeking peace and quiet! So, as soon as my pump-chemo was cancelled, I knew I was only a week away from another systemic treatment and had less than a week to pack and find some friends whose schedules allowed for them to help me move, since I still can't really lift much or exert myself a whole lot. Yet, three days later I was blessed with the help of some dear friends, and all of our things were moved for us. And we now live in a great space in a quiet little neighborhood which couldn't be better.

And while I was typing this blog entry, I received a call from Dr. Kemeny's office; my blood work shows my Alkaline Phosphatase count is still a bit too high so I'm ineligible for a liver-pump infusion on Wednesday and will again do systemic chemo treatment in place of it on Wednesday January 25th.

The bad news? I have to cancel our only other scheduled gig, which was at the Beach House in Lansing on January 27th. This just ain't working for me. I just texted one of the guys about doing a private performance somewhere between Ithaca and Auburn. Maybe even this Friday if possible. Music is an outlet that provides me SO much. It's something I absolutely wont do without. Yes, I play music with friends - dear friends - and I love it. But there's nothing like performing with a band of incredible musicians who've come to operate like a finely tuned machine. And then add the energy of a great crowd. It's a high that can't be created any other way. And like I said, it's something I absolutely wont do without.

Grateful

This morning I bought a hot breakfast and a cup of coffee for a pregnant junkie with only two days to get out of her apartment. And she's just a kid. What the hell am I doing feeling sorry for myself?

I watched this video again this morning (click on the link below). It moves me to tears. Thank you Fran xoxo

The Light is always there for us.

Disappointed

This morning a friend & I went to Manhattan for my second Liver Pump chemotherapy treatment. An hour after I had my blood drawn, I met with my doctor, Dr. Kemeny, and she informed me that certain liver enzyme numbers were too high and I would not receive a treatment today. Instead I will receive another systemic chemotherapy treatment on Wednesday January 11th. She then suggested that we schedule my blood work two days in advance in Ithaca, so I don't have to drive four hours to find out it isn't necessary. I agreed that it was a good idea....................................

This is a significant change, because upon our first visit, November 30, 2011, she was insistent that my blood work be done in-person, in the clinic, by the MSK staff. Today she changed her mind and I am relieved. For me, it was a lot of time, energy & money devoted to a trip that provided very little. Although, if nothing else, it provided Dr. Kemeny what she needed to approve my blood work to be done in Ithaca to keep this from happening again and I am grateful for that.

The most disappointing part is that I had to cancel my January 13th performance. If I'm receiving chemotherapy from January 11th-13th, there is no way I can do a gig on the 13th. The nausea & toxic feeling on the third day of treatment, as well as the day that follows (Friday & Saturday), are just brutal. Performing is out. Once my liver pump treatment has been completed and I am back on schedule, I will book another gig (hopefully for February).